Going private: A second opinion

Wowzers. So I finally managed to catch up on everyone’s blogs! You’re all busy! And I have been too… Though sadly it’s mainly been work related rather than fertility related.

One fertility related update is that we went to Clinic 2’s open day. I mentioned in my last couple of posts that we were doing everything possible to understand our options prior to IVF cycle #2, as I’ve become more and more convinced over time that there must be a reason for my “unexplained infertility”.

As per my last update, we put in a request to delay our planned NHS cycle 2, as I wanted to see if we could get a few more opinions first. The main one (in my head) is the appointment I have in early February with the reproductive immunology specialist. (See my last post for details – I know that some people think they’re charlatans, but I’m willing to give it a go to try and rule out some issues at least, as I’ve had most physical scans and standard tests.) We also decided we would go along to find out more at Clinic 2.

Clinic 2 is a private fertility clinic that promotes mild/natural IVF. We went along to their open day last weekend and it was interesting. An open day is a free event although of course they’re heavily focused on upsell (making you come to their clinic for treatment). What I find interesting about Clinic 2’s approach is that they don’t advocate conventional IVF, which is the stuff you get on the NHS and the standard IVF that most people who talk about IVF are getting.

Basically, standard IVF wisdom is you ideally want to get as many eggs as possible, avoiding OHSS (ovarian hyperstimulation syndrome, where your ovaries go into overdrive and produce too many eggs and you get health complications). So standard IVF long protocol (which I did for our first cycle) has a period of down regulation (shutting everything down), and then you stimulate the ovaries to produce more eggs than they’d usually do in a cycle. In natural cycle IVF, they try and work with your natural cycle and catch the 1 or 2 eggs you would produce anyway. In mild IVF, they give a bit of mild stimulation (a lower amount, because you haven’t down regulated so they don’t have to start you up again) and you might get 2-4 eggs. It’s really different because they’re focusing more on egg quality and they feel that a lower amount of stimulation results in fewer, better quality eggs.

Anyway, we thought this sounded interesting, especially as I was a slow responder. Of my 12 eggs (after almost 2 weeks of stims), 6 fertilised, 3 were still going on day 2 and only 1 made it to transfer at 5 days. None of them were good enough to be frozen! In the natural/mild cycle they have a similar level of fertilisation but with a lot less drugs/side effects. (This is appealing to me as I did not enjoy the drugs at all.) It also means you can do repeated cycles without too much trouble because you’re not taking lots of drugs.

If you go to the open day, they upsell a consultation for about half the regular price. This is a far more detailed scan and a medical history / advice. So we paid our money and went along this week…

My initial thoughts on the consultation were that I was a bit irritated. We’d paid this money when clearly it was an upsell to make you want to do IVF with them, and the whole appointment was set up for that. We were massively delayed in seeing the doctor – over half an hour which considering our appointment was in the morning, meant they’d built up delays very quickly. Also, it was near my office and I felt a bit funny waiting around in a waiting room of a fertility clinic where someone could have seen me. (They have frosted glass but still. You do feel a bit exposed. I know it’s nothing to be ashamed of but I’m still not keen on work knowing my business.)

However, once the doctor got on with the scan, I did feel more at ease. (Funny when someone has a wand up you!) For one thing, their scanners are way more sophisticated than the NHS. And for another, he was really patient and explained everything and showed it so we could see it and understand it. He took a lot of measurements, looked at blood flow and looked at my ovaries and follicles and womb lining. It was far more visible and understandable (once he explained things!) so it was quite an education. My experience of NHS scans is they point the screen away from you and don’t really show you stuff or explain anything, unless it’s bad news. This doctor explained everything and what we should be looking for.

The scan showed that I had around 8 follicles in total and I was on day 5 of my cycle. It was a bit annoying as he said it would all be more visible on day 10, but they had told me when booking that it didn’t matter when it was in my cycle. I think when you spend a few hundred quid that you should be told things like that! Nonetheless he said that follicles are generally similar numbers although they vary from cycle to cycle. 8 follicles is a bit low and they’d expect more for my age. This was between both my ovaries – one had more and one was squashed in a peanut shape (squished in the middle) and only had about 2 or 3. Not great news.

His recommendation was that I get my AMH tested. This anti mullerian hormone gives an idea alongside the follicle number of my ovarian reserve. It means mine looks low for my age. It’s a test they don’t generally do at my NHS place as they’re not so worried about ovarian reserve as my number of eggs retrieved was within their tolerance limits…

In addition, I look like I have 1 growth in my front womb lining which he said he didn’t think would be an issue (as it’s in the front wall and not sticking out) and another smack bang in the middle. WTF?! It’s just like the other ultrasound tech said, that it seems like I have a fibroid… Where I allegedly had a fibroid removed. The scans at the place I went to are super sensitive and more sensitive than NHS scans – he even showed it in 3D. It’s either a fibroid or some sort of round growth/scar tissue. It’s just under 10mm which means that by usual standards, it wouldn’t affect fertility. But as far as they are concerned, they’d look to get it treated (err, I did, last month!) before doing any transfers.

I think that’s the thing with private clinics – their tolerances are lower. It’s easier to do more investigations and tests when patients are paying. I get that. It’s just a bit difficult to know what to do sometimes.

We explained about our NHS cycle and the fact we are eligible for 2 more and due to start another one, and he said we might as well do it, because if we are eligible then why turn down a “free” cycle? And in this case he said don’t bother with AMH because a standard long protocol won’t be concerned with ovarian reserve/egg quality given we retrieved 12 eggs last time. He recommended various things (like getting my weight down – again, as I am already feeling bad about all this post IVF/miscarriage weight gain, it’s not great for my self esteem! And I’m really not huge; I’m thinner than a lot of my friends, including the ones with babies… Agh).

He said if we did the NHS cycle and it failed then he would recommend mild IVF, given my previous cycle success/fertilisation rate. Maybe a few mildly medicated cycles and freeze the embryos, before transferring them once I have the suspected fibroid and so on (weight!) sorted out. It’s a thought. And it makes sense not to pay for a cycle when we have a “free” one on the table, even if it is likely to be highly medicated/highly stimulated. Unless I have a real aversion to taking more drugs then I should just go ahead and try the NHS cycle next. There are definitely pros I can see of going private though, such as the fact that this clinic tries to fit to your cycle rather than down regulating and heavily stimming you. It’s open 7 days a week rather than certain days for scans. And I think you are much more empowered as a private patient to ask for things… Even just to see the scans when they’re scanning you! This whole decision thing is such a minefield!

So where are we now? I’m not quite sure.

I have an appointment with the immune specialist at the other clinic, at the beginning of next month. We had confirmation through that my request to delay our NHS cycle for IVF 2 was accepted, so I’ll be starting down regulation at the end of March, unless I’m advised otherwise by one of my second opinions. This is good timing because Dr S, the immune guy, says ideally you would take any immune related drugs for around 6 weeks before starting IVF… It wouldn’t be 6 weeks probably but it would possibly still be beneficial. I still don’t know if I have any immune problems obviously. I may have none and T thinks it’s all a bit dodgy, but I am happy to be proved wrong and if it turns out I have no problems I will feel happy to have ruled them out.

It also gives me a bit of time to try and lose some of the dreaded weight. I’ve been trying since new year and I’ve lost around 2 kg (I fluctuate every day) so it’s slow progress, but I am working on it. I find it hard to lose weight without starving myself and I know that wouldn’t be a good idea for fertility. I just wish they wouldn’t emphasise this sort of stuff as it is such a mind****. I have been way lighter, and in my 20s, and I still didn’t conceive. I don’t think losing a bit of weight is really the problem or I would have a few babies from my lighter 20-something years. And all my friends who have babies are not skinny – most of them are larger than I am! It’s just another way to make us feel bad about ourselves when it most likely isn’t the problem. The same goes for age… I’m into fertile death zone now but I wasn’t always, and it wasn’t any different, so really please don’t tell me I left it too late or I’ll feel tempted to punch you…!

My sister and I have been talking about the whole thing too. I sent her the book on immune stuff… It seems like we have quite similar profiles. It’s tough for them as they’re only eligible for 1 NHS cycle where they live – and that’s the one that ended in a similar way to mine. For their next cycle they’d have to go private so I’ve been sharing info with her around the options I’ve found out about. I’ve been trying to imagine how I would feel if she got pregnant before me. It’s strange as she has had far more health problems than I have in the past so I always expected she might have problems getting pregnant. I guess I would be happy for her, and I know she’s struggled like I have. But it would still be hard I think. The best outcome would be if we were both pregnant at the same time… I know that’s very unlikely, but we can dream!

Other than that, I’ve had lots of hassle with this one particular person at work. I’ve talked about this woman on a previous post – the one who asked me if I was pregnant. Her upsetting behaviour is escalating and lately she’s been trying to take credit for my work. It’s all pretty upsetting but possibly more so as she’s now visibly pregnant. So not only is she causing me work hassles but she’s also got the one thing I want. (Not her baby! That would be weird! You know what I mean!) Ah, it’s times like these I think life is just not fair.

But also: I am okay, strangely, apart from this. I feel like I’m doing my best to resolve things. I have made appointments; I’ve done research. I managed to get my cycle put back a couple of months. And I really am working my butt off at work… Hopefully someone will notice. I have bigger fish to fry. My Dog, who is practically the centre of my universe, has been a bit unwell this week so I’m trying to spend time with him. He had some painkillers as his leg was hurting, but they seem to have given him diarrhoea… So I came home this evening to SIX little piles of [stuff] – not nice! And definitely not nice for Dog, who isn’t usually that prolific… He even managed to do another one, so he’s really not his happiest right now. We stopped the meds a couple of days ago but as it took over a week for him to react like that, we figure it might take a few days to calm down. Poor Dog! He’s on bed rest (which to him means tearing round the house and jumping about like a rabbit – he doesn’t do bed rest). I’m hoping that he perks up to his usual self soon. And I hope I do too!

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26 comments

I’m behind on posts, so I didn’t know you were getting second opinions, but I am so glad you are! I’m particularly psyched that you’re going to see an immune person! Hooray! Like you said, at the very least you will have ruled it out and left no stone unturned. On the other hand, you might find answers to your infertility! I’m feeling so hopeful for you! I’m sending vibes out to the universe that you and your sister get pregnant at the same time! But that maybe you’re first by just a little bit. 😀 And that woman at work, ughhhhh! She just sounds awful all around! I wish you didn’t have to deal with her.

Yes, that’s the way I’m seeing it. I figure I might as well see if there might be a reason… And it at least would put my mind at rest in the way of me not thinking “I wonder…?” all the time! I can’t really get behind this idea that there’s no reason for things. But I am bad in that way! I’m sure there are things that are not able to be explained… I guess I just want to know when to give up. Thank you for your support! X

I’m 100% with you! I don’t believe in “unexplained infertility”…to me that’s just what doctors say when they’ve done all of their standard tests and don’t know what else to do. I think all infertility has SOME sort of explanation. And maybe there is a very, very small percentage that truly doesn’t have an explanation, but I think that number is far smaller than the percentage of cases doctors actually say are unexplained. They told me I was unexplained for years, but now that couldn’t be farther from the truth. I now have more explanations that I know what to do with haha. I hope you find your answers soon! I think you will, I truly do.

Well… I feel like it’s a line that we are fed. Along with “1 in 4 pregnancies ends in miscarriage” – so we should all just accept it? How come some of my friends get pregnant really easily then? It’s the same 1 woman who keeps having the miscarriage in many cases. That’s not okay, surely.

Well, I like the sound of the private doc, but yes, I agree to take advantage of the NHS cycle first. It may just work and wouldn’t that be great?! You’d be out no money.

I do like the idea of retrieving and freezing embryos for later use. This is becoming quite popular and success rates are going up because of it. It’s always better to return embryos to a “calm” body, which just isn’t the case right after retrieval. Our clinic has made this standard process now.

Thank you! Dog is feeling better today I think… We have had a rather messy weekend but hopefully coming out the other side (so to speak, haha!). Poor little thing.

I really really hope the NHS cycle works! Who knows?! I do feel like at least if I’ve seen the immune guy and I do the NHS one then I’ll feel a bit better to have ruled something out (or take some drugs or whatever he recommends). The immune diagnostics could cost a lot! But not as much as private cycles. At least we are exploring options. And yes, I agree it does seem to make sense to try and have your body in the best condition possible before transfer! Which means I would have time to lose weight (ugh) and try and get the fibroid or whatever it is sorted out too!

Second opinion is always a good idea! I had three rounds at one clinic, and after those all failed a friend of mine asked whether I had considered a second opinion… I had, and I had looked into different clinics here in Munich, but they all seemed to offer just the same stuff, nothing different, and the clinic where I was, was rated the best of them anyway. On the top, I really liked my doctor there, so I was puzzled. But researching the stuff further, I found out that the fertility laws in Germany are pretty tight, and across the border in Austria they are already able to do some things that aren’t available here. So, we went to another clinic, got a second opinion, and decided to give it a try there… I’m really hoping that it all works out for you, Nara! And I can’t help but thinking that it will happen. xx

Thank you! I hope that I have success like you’ve had! I’m very happy for you and it makes me feel a bit better to think you’ve done something similar in exploring other options. I do feel a lot of the clinics here offer the same (long) protocol and maybe that doesn’t work for everyone. It’s definitely worth looking at other options I think. Thanks for your support! Xx

It’s really interesting to hear about the 2nd clinic’s approach and the differences with the whole ‘going private’ thing (to the limited extent you’ve experienced it so far). I’ve heard a few people say that they only started making headway when they went privately, as clinics are more prepared to do additional testing and tailor your treatment. That said, the Doc is right: you may as well use your other “free” cycles, as you just never know! At least you’re exploring options now so, if it comes to it, you’ll have a better idea about what ‘type’ of private you want to do (i.e. mild IVF vs normal IVF).

There’s also no harm in delaying IVF No2 while you have the immunology tests. Hopefully they’ll throw up nothing, and you’ll get better peace of mind as you go into the next IVF cycle. If there is an issue, then it’s definitely better to find out before your next IVF cycle so they can hopefully do something to help you!

That’s so frustrating about the fibroid. Hopefully it’s scar tissue or something similar. It seems to be just one thing after another!

As for the comments about your weight, that is just ABSURD. I am telling you now lady that you’re not even verging on fat! As you’ve also pointed out, I know many people who are MUCH fatter than you who have gotten pregnant and had children easily.

As for the cowbag at work, how incredibly frustrating 😦 I work in a similar environment and people like that get away with it because the people higher up in the team don’t really know what’s going on beneath them, or who is doing what. It makes it a million times worse that she’s also pregnant. I’d find that hard to stomach. All I will say is, you don’t know what goes on behind closed doors and you also don’t know what is around the corner. There must be something seriously wrong with her, or some personal insecurity, that makes her act like that. I know it doesn’t particularly help now, but in the long run you will be much better off than she will because because you will have your family (however that may be, hopefully through IVF take 2!) and you will also be a decent, hard working, kind, honest, hilarious person alongside that. She won’t have most of that.

Urgh that’s annoying! I typed a long response and hit the wrong button! In brief I was agreeing with you! 🙂 I feel like I want to know if there is a reason… And if not, I want to know if we should give up. I’m hopeful about the private clinics as I do feel we are more empowered to ask questions and try new things. Also the immune stuff is so controversial so it seems a bit of a long shot… But then I read the book and it seemed quite aligned with my experience, so who knows?!

As for cowbag, all I can do is try and avoid her and hope she leaves for mat leave soon! Eek! 🙂

I think it’s really cool that this clinic suggested doing the NHS IVF first, although I do wonder about the lack of personalisation at the NHS – and the time aspect too. Hopefully this will not be needed and you will have a successful outcome from your next cycle, but if it doesn’t work you and the doctors will learn more about your infertility. At least this is what I keep telling myself anyway 🙂

I can’t believe your sister only gets one shot at the IVF – the NHS truly is a postcode lottery, it doesn’t seem right in this respect. I know that the level of care will naturally be different, but policy like number of attempts differing like this is craziness. Sorry, I’m ranting!

I think this clinic’s approach sounds good. I hope you are feeling like you have taken the most possible control of your infertility as you can now – you have taken some really positive steps to keeping your options open and well informed!!! Why does it have to be so hard like this?? That’s the sad thing about all this. grrrrr.

I hope Dog gets better soon, I know how worrying it can be when the furbabies are like this 😦

I feel like I should end this message on a positive note – soooo Happy TFI Friday! (Ok so it’s saturday your way now, but happy weekend!!)

Thanks chuck! I do wonder if NHS is unnecessarily delaying us doing the “right” thing. But equally I feel that I would have a real job convincing T to move to the other type – either mild or immune treated or both – rather than do the free cycle. He’s still unconvinced of the different approaches and is more of the idea that it’s a numbers game – whilst that’s the prevailing wisdom, I feel like I really couldn’t cope with another miscarriage very easily. (I realise that might happen. Or we might get no eggs/ embryos. But I want to lower the chances if I can!

I’m with you on the postcode lottery thing. It seems very unfair. I also don’t understand how infertility can be considered a low priority when people get boob jobs on the NHS! I totally agree it’s less important than lifesaving treatment but I’m sure it has a bad effect generally on health (depression etc). I really wish it wasn’t so hard and we didn’t feel like we were fighting for people to take it seriously. I’m grateful for treatment but I don’t think it’s made easy for people and I also think some people may not have the capacity to advocate for themselves or fund private investigations.

Thank you as ever for your support… For what it’s worth, I had a great lazy weekend! 🙂

I’m glad to hear you were able to get a second opinion! I fully believe that the only reason I ended up getting pregnant is because we left our old clinic (where we did a ton of unsuccessful medicated/IUI cycles) and sought a second opinion. Of course in the US (in our state anyway) infertility treatment isn’t covered by insurance (which we pay hefty premiums for, so it’s annoying how limited it is in terms of coverage) so we were paying out of pocket regardless of where we went. But if there’s one thing I’ve learned throughout this whole long, painful journey, it’s that you HAVE to stand up and advocate for yourself in order to get what you need. So I think you are absolutely doing the right thing by fully exploring all of your options and being vocal about your needs. I’m so excited for you because I really feel like things are going to work out for you soon!!!!!!

Thank you! I’m really glad that a change of clinic worked for you. I’m hoping that we still get some success from our existing clinic but that maybe things go differently this time because we are doing a slightly different plan (Menopur instead of Gonal F, maybe starting different dosage) and I’ll hopefully be less stressed as I’m not on the Project from Hell. Also I hope that something comes out of the immune appointment although who knows. Maybe it’ll be a very expensive way of easing my mind (and wallet!).
It’s really tough that you guys have to pay for everything – although in a way I think it makes you more informed and able to advocate. I kind of feel we are so grateful for treatment that we accept what we are given without questioning it. I feel hopeful that we are trying to question things a bit more!

Wow – it seems you received a lot of good info, but it is still so confusing! I will enjoy reading about what you decide to do for sure! IVF sounds so complicated and exhausting. I am thinking of you! It also sounds like you’ve been crazy busy besides (which sometimes is a good thing so we don’t obsess about pregnancy) but then…poor dog too! You have your hands full but I always am so impressed by your attitude and practicality. I also think it would be wonderful if you and your sister could have babies around the same time! That could be such a great bonding experience! Can’t wait to see how it unfolds. I feel positive that so many options are coming your way with treatments. Xoxo

Yeah, I have somehow been quite busy and it took an age to catch up on everyone’s blogs! Stuff is moving on for everyone so that’s good. Hopefully we will be too once we have got February out of the way! It looks like we will be starting cycle 2 in March so not too big a delay. I was due to start down regulation next week so it’s a couple of months but I feel better that we will have time to do the immune tests before then.
Dog is feeling better I think. A bit of a sloppy weekend (Euuuw!) but he seems back to normal this morning so I’m hopeful the medication has worn off! Poor thing!
I think my sis will be starting IVF at a similar time so that is quite exciting. But equally I feel a bit anxious that it works for one and not the other. We have taken a while to get closer and I don’t want to lose that. I guess we can only keep trying and hoping. Thank you for your support! Xx

I hope that you find some answers at the immunology appointment next month. Such a hard decision for you to decide between the two clinics, but free is always nice. 🙂 IVF is becoming such a big business that clinics forget we are people just trying for a child and we should be told what is best for our situation..shouldn’t be up sold for more money!! Xo

Yeah I’m with you on that one! Well at least we do have an almost free option. I’m not complaining about that – well I am a bit but I don’t really have the right! I feel as if they could maybe save some money by doing more testing up front but T thinks it’s a numbers game and they have enough success to be able to do that. I don’t think I fully appreciated how traumatic a miscarriage would be. I’m hopeful at least that we have a plan of attack. I hope you are doing well too! Xx

Wow it’s so great that you got a second opinion already! It’s great that they are encouraging you to use your free cycles before you go to them. Hopefully they work and you don’t have to go private.

I’m so curious to hear about how your immunology consult goes (I am actually having labs drawn for an immunology panel on Monday…I’m scared but also so curious if they will find something to further explain the miscarriages). Good luck!

Yes, I was surprised they suggested going to do the NHS cycle and not go straight to them. We would have lost out on our free cycles if we did that and the NHS found out (as it makes you ineligible, although they aren’t allowed to share data unless we agree).
My immunology consultation is in early Feb so I’ll definitely update. I don’t have the follow up till end Feb as the doctor is on holiday but I’m hoping maybe we could be flexible about the results and trying to get them sooner. Apparently they only give the results in a consultation! It’s a bit of a pain as I’ve gone to his further away practice (out of London) as they have more availability there. We shall see if they have any cancellations! I hope your consultation goes well!

For me getting my immunes tested was the best thing ever. Of course I’ll never know if I tried again without going through that whether it would have been successful, and given so few women have these tests a bunch of immune issues could be so so common and even people conceiving naturally may have them, but for me having them tested and taking extra medication in relation to the results got me my dream and for that I’ll be forever grateful (especially as we couldn’t have afforded any more cycles as in my CCG I’m considered too “old” for NHS treatment, even though NICE would say I should get 3 rounds).

In my experience even private clinics can vary a lot in how they treat you – some a lot more individual than others, and that is why it is good to investigate a number of clinic options and also get thoughts of those who have been to them. I heard a lot of good things about the more natural mild IVF cycle that you mentioned.

I really hope that the tests help (even if just to rule out immune issues) and that you don’t need to use any more than your “free” NHS goes, and that this next cycle will be your time.

Ah, I’m so happy for you that everything is going well for your pregnancy. I can’t believe you’re too “old”! I’m late 30s now (I can’t claim mid any longer, sob) and they’ll still treat me, although my sister has a different trust and they only get one cycle whilst we get three, which seems properly unfair.
I bet that private clinics are different! I try and tell T not to look too closely at the stats either because I think they are sometimes quite selective in what they report. Like I’m not bothered about pregnancies – I want to know live births!
I’m going to read back through your blog – what did you get told immune wise and was it something fairly standard? I do feel that there has to be some sort of answer rather than “just unlucky” but you’re right – it could just be keeping on trying! It’s hard to tell but I am heartened by your story! Hope you are feeling better! X

Just catching up on reading blogs… Yeah, totally don’t think that “losing a few pounds” is going to effect your next cycle one way or another, I know that can feel like they’re saying “well, if you hadn’t gained 5 lbs maybe you’d be more fertile.” WTF, NO.

Ha. Thanks! I do need to lose weight though. I’m trying!! But I’m not convinced it’s the reason I’m infertile, given I’ve been significantly lighter during my alleged more fertile years! I was happily within normal BMI for most of them and it’s only the damned fertility drugs and miscarriage that took me over! That’s a head****!

just wanted to wish you good luck! I’m also preparing to start IVF round 2 in a few months. I think I was also a slow responder and I only ended up with 2 eggs which was really disappointing. I have also read good things about natural IVF